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Giant Cell Arteritis
Jan 18, 2008 12:44AM
- 9 comments
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I've been diagnosised with Giant Cell Arteritis. Does anyone have this? I have not been able to get a biopsy but the doctors have put me on prednisone since April. I thought it was gone and then it started again. Sometimes my head is so sore all I can do is hold it and cry and pray. I have arthritis in my jaw and cheek bones and migranes, which makes it difficult to know exactly what is causing the head pain on any given day. My jaw bones are cracked, the pain is in the same area as Giant Cell. Its hard to disinguish where the pain is from until it spreads all over my head. It says that this illness can cause blindness if you do not take prednisone so I take it. Prednisone causes a multitude of other medical problems, it helps one and creates new ones. Since being on prednisone I have allot of water retension all over my body, especially my legs and feet.Some days I can hardly walk because of the pain from edma. The pills to reduce the water do not work for me. Please contact me if you have this illness. I have other chronic illnesses that also cause pain, Fibromyalgia ,Polymyalgia, and Arthritis. My muscles have become very weak since starting prednisone, I now have to use a walker to walk through a store. A year ago I could walk through a mall and run down the street and now I feel like a big whale stranded on a beach. I am very strong emotionally but this illness frightens me. I know that prednisone helps many people but I feel very ill on it. My throat even tightens like it does from an severe allergy.
Hi. Just read your comments. I am a fortysix yr old woman just diagnosised with Giant Cell. I can relate to everything you have said. Having a lot of trouble with illness and cure. Dont go off the steroids! You can lose your eye sight. My eyes are too tired now to stay but I will get back to you tomorrow,ok? I think we have a lot to talk about... Take care.
Hi Belita. How are you feeling today? If you dont mind me asking, how old are you? I am 47yrs and it seems quite young to have this illness. I was diagnosised in Nov07 and kinda thought that when I started treatmemt everything would be fine. I regret to say its not. I have been trying to get my meds down to 7.5mls but cant, with return of symptoms,at 35mls. The cure is almost as bad as illness. Except for the pain of course. Are you still having pain? As for the other side effects, I have decided to be possitive about them. The moon face,weight gain and tiredness are not nice but at least the pain is gone and everything returns to normal when we finish meds. From what i understand,that will be at least 2yrs.
I have another personal question please? Are you working or if at home,has this illness greatly effected your life? Made less of it? I have been struggling to stay as normal as I can but am losing the battle i think.
Please dont feel so bad about yourself. You have an illness, its not your fault. I think you should be kinder to tourself. You have been trying your best for nearly a yr. Well done!
Two things about me, I also have cataracts in both eyes and I just taught myself how to use a computor. Late starter or what? I know believe any thing can be achieved. Hope you feel a bit better and you get a chance to drop me a line. Regards,cath278.
I have another personal question please? Are you working or if at home,has this illness greatly effected your life? Made less of it? I have been struggling to stay as normal as I can but am losing the battle i think.
Please dont feel so bad about yourself. You have an illness, its not your fault. I think you should be kinder to tourself. You have been trying your best for nearly a yr. Well done!
Two things about me, I also have cataracts in both eyes and I just taught myself how to use a computor. Late starter or what? I know believe any thing can be achieved. Hope you feel a bit better and you get a chance to drop me a line. Regards,cath278.
Cath 278
Hi Cath
I've been in allot of pain and just checked my eamail today. Thankyou for emailing. I had some really bad attacks this week. My head is so sore I sat and cried, my eye balls ache something awful . I seem to lose vision from taking the prednisone and my left eye runs. I'm at 60 mg now I tried to go down but I just got worse so the doctor told me to go up again. I've been on predisone for 11 months, 60 mg for 3 months and then 20 - 30 and none for a month.
I had an opportunity to go back to university to get my masters, I'm struggling but even if I can't work I will graduate. I have one more course to take after this term. I finished in less than threee with very good grades. I'm proud of myself. Its been 22 years since I was in university last.
Its good to talk to others with this illness. My faith is what keeps me going when I'm really afraid but I needed to reach out and hear from others that struggle with this illness. Its very lonely when you have a chronic illness or chronic pain. I also have Fribromyalgia, Pollymyalgia and Arthritis so pain is not new to me but I think that pain in the head and eyes is the worse and scarey.
Does your vision blurr from the predisone, or did it before the cateracts? Sometimes it feels like the prednisone will make you go blind instead of this condition.
My head and eyes are very sore right now so I will go. Take care.
Hi Cath
I've been in allot of pain and just checked my eamail today. Thankyou for emailing. I had some really bad attacks this week. My head is so sore I sat and cried, my eye balls ache something awful . I seem to lose vision from taking the prednisone and my left eye runs. I'm at 60 mg now I tried to go down but I just got worse so the doctor told me to go up again. I've been on predisone for 11 months, 60 mg for 3 months and then 20 - 30 and none for a month.
I had an opportunity to go back to university to get my masters, I'm struggling but even if I can't work I will graduate. I have one more course to take after this term. I finished in less than threee with very good grades. I'm proud of myself. Its been 22 years since I was in university last.
Its good to talk to others with this illness. My faith is what keeps me going when I'm really afraid but I needed to reach out and hear from others that struggle with this illness. Its very lonely when you have a chronic illness or chronic pain. I also have Fribromyalgia, Pollymyalgia and Arthritis so pain is not new to me but I think that pain in the head and eyes is the worse and scarey.
Does your vision blurr from the predisone, or did it before the cateracts? Sometimes it feels like the prednisone will make you go blind instead of this condition.
My head and eyes are very sore right now so I will go. Take care.
Hi belita. Wrote you a lovely letter last night and then wiped it! I really do hope you are feeling a bit better today. The pain can be quite bad cant it? actually its not the headache that I cant deal with ,its the sore eyes. It makes every thing impossible. It was snowing here today and I was wearing sunglasses. I dont drive but even being a passenger at night time is hard. I wear sunglasses almost all the time now.
Im worried about you. You should have some relief at 60mgs. I hate to say this,but are you doing too much?( first let me preface that by saying Well Done to you about your Masters). Some of the hints i was going to give you were; Ddont let yourself get over tired, learn when you have gone far enought for you and take a break.I take two rests a day.15 mins-before I get tired. It really has helped me to cope and I get more done.
Do you know those eye pillows they use in yoga during thier meditaion? A friend gave me one and I put in the fridge an rest it on my eyes. It is very soothing.
I also protect my head from any breezes. In the car, the window down the smallest bit,hurt me.
Ive also started taking "Manuka honey,15 plus" to help my immune system. Its safe to take and I got fed up of picking up every infection.
I know Ive only had this problem 3mths but Im having such problems with the steroids to. They wear me out, make me high as akite one day,next bang down.Ive only told my husband and two friends whats going on so i would say everyone else thinks Ive lost the plot.
Im down to 25mgs but its not working. Pain is coming back. I will leave it for a few days to see if my body can adjust and then go up again.
I wish i could better tell you about the blurred vision. I know that I have been back and forth to my ophthalmologist for the last eight mths but she never found the cataracts. Found out about them while in hospital in Nov. It seems they are growing fast. One ,on left side(trouble side) is progressing rather quickly, even since Nov. I dont think the steroids are causing the blurrieness but did you know that steroids GIVE you cataracts? May be that could be your problem. Have you had your eyes checked? Its a one in a million that I had them before treatment but seeing that you are on steroids since April it could be it.
Now ,before I go away, ive something to recommened to you. How about a massage or something you really like? I think you need a bit of spoiling! You are working so hard and trying so hard to deal with your illness, I think you must treat your self. Plan it for a weeks time, have something to look forward to. Small things can help with the big things!
Like you ,I have to go now.Eyes are so tired but I really wanted to get back to you. Chin up. Uoy are not alone with this problem any more. cath278
PS. May I ask? how old are you? and are you religious?
Im worried about you. You should have some relief at 60mgs. I hate to say this,but are you doing too much?( first let me preface that by saying Well Done to you about your Masters). Some of the hints i was going to give you were; Ddont let yourself get over tired, learn when you have gone far enought for you and take a break.I take two rests a day.15 mins-before I get tired. It really has helped me to cope and I get more done.
Do you know those eye pillows they use in yoga during thier meditaion? A friend gave me one and I put in the fridge an rest it on my eyes. It is very soothing.
I also protect my head from any breezes. In the car, the window down the smallest bit,hurt me.
Ive also started taking "Manuka honey,15 plus" to help my immune system. Its safe to take and I got fed up of picking up every infection.
I know Ive only had this problem 3mths but Im having such problems with the steroids to. They wear me out, make me high as akite one day,next bang down.Ive only told my husband and two friends whats going on so i would say everyone else thinks Ive lost the plot.
Im down to 25mgs but its not working. Pain is coming back. I will leave it for a few days to see if my body can adjust and then go up again.
I wish i could better tell you about the blurred vision. I know that I have been back and forth to my ophthalmologist for the last eight mths but she never found the cataracts. Found out about them while in hospital in Nov. It seems they are growing fast. One ,on left side(trouble side) is progressing rather quickly, even since Nov. I dont think the steroids are causing the blurrieness but did you know that steroids GIVE you cataracts? May be that could be your problem. Have you had your eyes checked? Its a one in a million that I had them before treatment but seeing that you are on steroids since April it could be it.
Now ,before I go away, ive something to recommened to you. How about a massage or something you really like? I think you need a bit of spoiling! You are working so hard and trying so hard to deal with your illness, I think you must treat your self. Plan it for a weeks time, have something to look forward to. Small things can help with the big things!
Like you ,I have to go now.Eyes are so tired but I really wanted to get back to you. Chin up. Uoy are not alone with this problem any more. cath278
PS. May I ask? how old are you? and are you religious?
Hi Cath
I just read your other message and replied and then I found this one. I'm am studying to be a Chaplin, I'm in the Master of Divinity program at the university. I'm 58. I'm almost finished except that I the last part of my degree involves working on the wards of a hopsital or prison, but because of how weak I feel I don't think I can. I'm accepted but I'm not feeling very well and may need to finish my degree in another way.
Thank you for the advice for the eyes and how not to get any bugs. My husband has an awful bug and I've taking Echinacea. This use to work before the prednisone. I had a very bad throat infection after Christmas for 3 wks I'm hoping I can keep this one away. My eyes were tested a few months agot. One of my lids has started to droop because of teh Prednisone. With this drug things happen rapidly so I guess I'll get my eyes checked again. Since I've increased to 60mg my vision is better but I'm very depressed and full of water. I look like a bull frog!!! The joy of Prednisone. Thanks for responding . Take care and have a nice weekend
Belita
I just read your other message and replied and then I found this one. I'm am studying to be a Chaplin, I'm in the Master of Divinity program at the university. I'm 58. I'm almost finished except that I the last part of my degree involves working on the wards of a hopsital or prison, but because of how weak I feel I don't think I can. I'm accepted but I'm not feeling very well and may need to finish my degree in another way.
Thank you for the advice for the eyes and how not to get any bugs. My husband has an awful bug and I've taking Echinacea. This use to work before the prednisone. I had a very bad throat infection after Christmas for 3 wks I'm hoping I can keep this one away. My eyes were tested a few months agot. One of my lids has started to droop because of teh Prednisone. With this drug things happen rapidly so I guess I'll get my eyes checked again. Since I've increased to 60mg my vision is better but I'm very depressed and full of water. I look like a bull frog!!! The joy of Prednisone. Thanks for responding . Take care and have a nice weekend
Belita
Dear Belita:
Although I do not have this illness, I can't even imagine what you and those who have this are goiing through. I thank our Blessed Lord for the opportunity to share with you the comfort that our faith in Him brings us.
May God bring you healing and a touch of His hand upon you. Our God is an awesome God and He can do all things. You certainly have a wonderful and loving attitude and even though you are in such pain, you shared your love and concern to others. You'll never know how much comfort you brought to me when I was so devastated by my kitty's illness. Thank you again Belita. God Bless You.
Paintsflowers
Although I do not have this illness, I can't even imagine what you and those who have this are goiing through. I thank our Blessed Lord for the opportunity to share with you the comfort that our faith in Him brings us.
May God bring you healing and a touch of His hand upon you. Our God is an awesome God and He can do all things. You certainly have a wonderful and loving attitude and even though you are in such pain, you shared your love and concern to others. You'll never know how much comfort you brought to me when I was so devastated by my kitty's illness. Thank you again Belita. God Bless You.
Paintsflowers
Hello Paintsflower
I apollogize for not seeing this email until now. Thankyou so much for your kind words. I found it today on Easter Sunday when I'm feeling very sad about a family matter. I guess it was God's will that I not find your email until today when I needed it most.
I hope your feeling better about the loss of your kitty. Although we never forget them the ache gradually gets better.
Happy Easter
God Bless You
Belita
I apollogize for not seeing this email until now. Thankyou so much for your kind words. I found it today on Easter Sunday when I'm feeling very sad about a family matter. I guess it was God's will that I not find your email until today when I needed it most.
I hope your feeling better about the loss of your kitty. Although we never forget them the ache gradually gets better.
Happy Easter
God Bless You
Belita
HI Belita, This is michelle. I just want to know how you are doing? Have you found out anything else? If you would like to talk im here.
Hi Michelle
Its nice to hear from you. I'm not very well this week so I will keep this short. I'm in the middle of term papers but will have to get an extension. I'm studying to be a chaplain and almost finished. I'm sorry, I'm very dizzy, I need to stop.
Thanks. I send an email soon
Bev
Its nice to hear from you. I'm not very well this week so I will keep this short. I'm in the middle of term papers but will have to get an extension. I'm studying to be a chaplain and almost finished. I'm sorry, I'm very dizzy, I need to stop.
Thanks. I send an email soon
Bev
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